The Layer Cake

Liam and I could easily become FoodTV junkies. Recently, while watching an early evening special on dessert making, I whispered to Liam, “Do you like to watch cooking or football better?” No reply, he was too engrossed in the egg breaking and flour pouring. After watching one cake being made, Liam said, “Mom, I need to make a real cake.” Even though it was 6 p.m., I relented. We hauled the KitchenAid up from the basement. We got all the ingredients out – “all” being three, including the cake mix. At 6:05 Bill zipped out to the store to get vegetable oil for us.

Liam eagerly completed each step. We broke our first egg together, and I used the biggest piece of shell to scoop out the little pieces. Then I gritted my teeth as he claimed, “I can do it myself now.” There were no shells in the last two eggs! We counted to 30 and watched while the ingredients slowly blended. Then we set the timer and watched the batter spin for two minutes. I turned it off and lifted the mixer attachment, and without hesitation, Liam leaned in and started licking the mixer attachment. His interest in the remaining tasks waned. As he finished his mixer lollipop, I poured half the batter into a round pan and half into a square pan. They were the first pans to surface from the back of the cupboard. I will never get invited to Ina Garten’s based on merits of my creation of a layer cake. With the circle precariously balanced on the square, it looked more like a squatty satellite on a stand than anything remotely edible.

But we still served it to our dinner guests the following night and no one complained. They were probably too awestruck after having had to eat dinner while gazing at my wig perched atop the Dartington vase. I didn’t realize until after they had left that I hadn’t put it upstairs. Thankfully, they are good, established friends.

To provide advance warning to our guests of the oddities they may find in our house, I need a little plate like Mom has had on her kitchen wall for years. It reads: “Come in, sit down, relax, converse. Our house doesn’t always look like this. Sometimes it’s even worse.”

Staying strong with a forkful of milk chocolate frosted chocolate cake,

Linda

Granddad's Pre-Sermon Prayer

Another letter arrived from Grandma Mills last week. I read only “O Lord” and knew it was Granddad’s voice on paper. In addition to his beautiful prayers, my gut says he had a knack for writing.

According to Grandma, this is “Granddad’s prayer he used when he gave the sermon in church once.”

I think it could apply to just about any time, any day, not just on a Sunday morning in a small Methodist church.

With an OK from Grandma, I am sharing Granddad’s voice.

“O Lord, grant that each one who has to do with me today may be happier for it.

Let it be given me each hour today what I shall say, and grant me the wisdom of a loving heart that I may say the right thing rightly.

Help me to enter into the minds of everyone who talks with me and keep me alive to the feelings of each one present.

Give me a quick eye for little kindnesses that I may be ready in doing them and gracious in receiving them.

Give me quick perceptions of the feelings and the needs of others, and make me eager hearted in helping them.

Amen.”

Amen.

Halfway done!

We just got home from MGH. I'm halfway through chemo! And I didn't have to stand on my head to get the port to work!

The next four sessions will be infusions of Taxol. I was told today that there is less likelihood of nausea with Taxol; no set nausea meds to take after the first infusion 12/11, only a boat load if I happen to experience nausea. Unsure of the side effects of Taxol, one friend on Taxol now said there was more achiness, but she's on her way to New York City tomorrow, so I don't think it has phased her to much.

We had a lovely Thanksgiving dinner, eventually. Watch for a longer story on Turkey and Fire. :) No damage, just a bit of excitement. It was made a true holiday by many. Our friends from New York City cooked and ate Thanksgiving dinner with us, complete with roasted chestnuts and the best stuffing ever. Friends near and far sent goodies and recipes for my friend Carol to make for us. Cranberry muffins, salad oil coffee cake, pumpkin muffins with cranberry & apple compote, banana chocolate chip muffns. Plus some English goodies to top it off, tucked around a Christmas cactus and a mum. And, we rounded out the week's meals with your gifts for "Fill the Freezer" with frozen food from Trader Joe's: a curry evening, lobster ravioli, pesto and tomato pizza, plus lots more goodies in the freezer. It felt like all of you were here.... and we cooked enough food that you easily could have been here and not gone hungry! Thank you!

Looking forward to a quiet weekend with my family.

Staying strong,

Linda

Grace

I keep needing and wanting a definition for grace. Is it a quiet blanket that provides calm? Thrown over a situation it melts away the impurities, the untruths, the frenzy and leaves only goodness. Grace is a peacemaker. It slows a building of energy. It appreciates every one as a creature of God. It balances Godliness with freedom of choice. When freedom abounds, fast and furious, grace, like a warm fleece blanket, douses the flame a bit, protects the Godliness. Reminds us what we truly are.

Grace is quiet. Grace is confident. I think of Mom when Grandma Murphy died. I was frenzied. Mom wasn’t cooking! How had the system broken down? Mom always cooks! Then the food began to arrive. Neighbors, friends and family appeared at our door with plates and bowls of food. Not necessarily a call beforehand, no scramble to vacuum a floor or clean the table off. Quietly, calmly Mom accepted help. The thing is Mom knew before the knocks came to the door. I can’t count the number of times I’ve been talking with Mom about, “What are you up to today?” And she is making food for someone. The guys are in the field and need sandwiches. A neighbor is ill. A farm friend has died. A young mother has a very sick little boy. Mom has worked it out. Grace through caring for others. At least while eating, those families have a half hour of warmth from someone who cares, the pain is momentarily eased. Mom’s cooking is her gift. Mom’s appearance at a friend’s house with a meal is grace, a fleece blanket to help the situation seem more bearable. Mom has shown me the power of grace not only in giving it but, perhaps more importantly, in accepting it.

But what do I do with it? I pray for God’s grace that I in turn may be graceful, gracious, full of grace. It’s a beautiful word and I sometimes recognize grace when I see it, but I have a hard time conjuring it up. Perhaps that’s the problem. Perhaps grace is a slow simmering pot of delicious stew, melding all the flavors together. And after stewing for a couple hours, the bubbles pop emitting not the smell of ingredients, but the smell of stew. It’s a culmination of events that produce grace, but yet, it’s not produced. Grace just happens.

But how to deal with it? Emitting grace is more imaginable, easier perhaps, than accepting grace. In our lives, busy and full, grace seems more elusive. However, in every day, there are tiny but great moments of grace. Sadly, our society misses many of these because we’re self-absorbed in the to-dos, should-dos and really need-to-dos. As a parent, some moments, thankfully, hit me in the face. A scream from the living room, “Mom!!” A frenzied return from the kitchen, “What?” A reply, “I love you!” “…Oh.” Like being tapped by the wing of an angel. A gift of grace. And if I dry my hands in the kitchen and go to the living room and hug my cherub, that’s accepting grace.

This brings me back to my biggest quandary: recognizing and accepting that more subtle grace as it moves about daily. How? First the world needs to spin a bit slower so that I can “see” grace when it happens. If only grace traveled as a recognizable fleece blanket, neatly folded, I could keep my eye on it. Then when I see it expand and cover something, that would be my “aha” moment. Assuming it’s spotted, and, oh dear God, it’s going to land on me. Do I want to be covered? Shall I run? Why? What will I do when it lands? Frenzy. I close my eyes. I plant my feet. I am quiet. I feel the tap of an angel wing. It’s beautiful, heavenly. And all I can return is a whisper. “Thank you.”

Rocket Fuel

Sunday morning was a PJ morning. (Coincidentally, my bottoms and top happened to match!) Late in the morning, Will droopily walked into the kitchen and with big sad eyes and a dejected voice said, “Mom… I need rocket fuel.” Before I could respond, Bill replied, “Will, I’m going to the garage right now.” I got a wink, a nod, and a thumbs-up before he went out the door. I saw only electrical wires come into the house.

Friday we stayed at school a bit longer so Will could fly his rocket down the big hill. He had made it: a paper towel roll body, a paper nose cone and a Kleenex parachute. He spent several minutes testing the rocket – throwing it up into the air, spiraling it straight forward, and releasing it while running.

Forty-eight hours later, and after spending Saturday with Bill and another dad/son combo at a Legos convention, Will is asking for rocket fuel. I rarely halt any experiments, unless they involve hot water or fire. Or a toilet bowl brush. And now, rocket fuel. My presence in this house gives the scientific word “control” a whole new meaning in experiments.

During our PJ morning and before breakfast, there was an hour or so of great peace in the house. At one point it was so quiet, I was convinced that Will was probably building Legos in the toy room and Liam was taping some trains together in the living room. I knew they were not together. But then I heard giggles. They were great buddies this morning! I briefly thought about joining in, but then I remembered a line from when they were babies, “Never try to make a happy baby happier.”

Fifteen minutes later, I couldn’t resist, I had to peek. They were in the living room inside a house they had built, complete with fleece blankets and pillows. About the same time I saw them, my other senses kicked in. I smelled chocolate. I heard Liam, in his not yet perfected whisper, “Will, can you open this?” Giggle, giggle. Chortle, chortle. Between the two of them was a gallon bag of Halloween candy. They were absolutely giddy when I busted them. They had pulled one over on me. They knew. I knew. “How many have you had?” There’s my Will, the oldest, the pleaser, “None.” Then my Liam looked at me, grinned and shrugged.

No shelf is out of reach in our house. High shelves are just bigger challenges with greater rewards.

Staying strong and trying to stay one step ahead...

:)
Linda

An MRI Girl

“Why should I keep these breasts if my annual mammograms aren’t effective?” I had been doing everything right. My surgeon’s response: “You are an MRI girl.” And guess what, I didn’t know I was an MRI girl until my breast cancer surgeon told me. In fact, I have probably been an MRI girl my whole adult life.

I have fibrocystic breasts, which is pretty common. My jaw nearly hit the floor when I saw the film from my mammogram as my surgeon said, “The problem is your breast tissue and cancer both appear white.” Indeed, the entire film was white. “The radiologist made a good catch; you were lucky.” This she said as she pointed to a smallish starburst, similar to pinching your shirt and giving the material a twist. That’s all there was on the mammogram. So that day, at 43 years old and not yet fully diagnosed with Stage IIa invasive ductal carcinoma, with one cancerous lymph node, I learned that I am an MRI girl. That means, after chemo and radiation, my follow-ups will be alternating every six months between a mammogram and an MRI. Had I had an MRI earlier, had my preventative plan included an MRI on occasion, well, perhaps I wouldn’t be bald now.

The task force currently suggesting the screening age be moved from women 40 years old to 50 years old claim to be making this recommendation not on costs but on scientific research. I don’t completely understand the members’ rationale. Stress is mentioned. Are the task force’s opinions weighing the benefits of mammograms with the “false positives” picked up by mammograms, causing stress in women who are left for some times weeks with the uncertainty of what the blip on the screen really is? That uncertainty was the most difficult part of this whole process, undeniably so. But knowledge is power. In the end, knowledge doesn’t always come easily. The school of hard knocks. It still exists.

As an MRI girl, WITH MY BREAST TYPE, I have a complete lack of faith in mammograms. For me, they are archaic. They are effective screening mechanisms for many women and my oncologist reminds me that it did pick up the cancer but… I am an MRI girl. And because of that I’ve had five areas biopsied, I’ve had numerous ultrasounds, I’ve had two MRI’s, I’ve had a PET scan, I’ve had three surgeries, I’m having chemo, and I’ll have radiation. Here and now, I’m thankful for each and every one of these treatments. Here and now, I’m choosing not to lift the heavy curtain, not to share the physical details of any of these treatments. Should I, the task force would have even a shinier new definition of stress.

When new computers come out, we wait for the hype to settle and when that happens, the price decreases and even more people buy. The economics of breast cancer screening does not work that way. I believe there are two reasons it was never suggested that I have a screening MRI: The cost of the initial test and the likelihood of false positives, of seeing too much, which would result in more expensive tests and biopsies.

As for a sampling of costs associated with my treatment, my MRI’s were approximately $2,500 each and one 6 mg shot of Neulasta, the white blood cell booster, is $3,000. As for seeing too much, while uncomfortable, I’d rather have had five sites biopsied a year or two ago than be wearing a red cap on my bald head today at 3 a.m.

Medical Expenses

One goal for the day: To go through four inches of unopened bills in the medical file.

Progress: All have been opened and are now dispersed into nine different vendor piles.

The review: Many are from the summer. Operation prep, biopsies, metal clip placement to mark the tumors, the surgeon, three surgeries. I haven’t delved into the costs to see if they are accurate, nor have I really felt like reviewing the physical details.

Instead, my attention turns to another smaller, manageable one-service date affair. The expenses of September 18, 2009. The day of the seal.

There are two sets of billings, one from the hospital and one from the doctor. Knowing the details of the day, I find great humor in the billing descriptions.

From the hospital “ER Charge – Level 2” $220 *** Each showing of Nemo =$110 -- Plus there’s a slight discrepancy: we were Level 4 the day of the event.

From the hospital “Removal of foreign body” $200 *** The rock was removed with long-handled tweezers owned by the hospital. Foreign body? It was a home-grown rock.

From the doctor “Physician” $86 *** Diagnosis: “Liam, you have a rock in your nose.” Well-established before the trip.

From the doctor “Surgery” $357 *** 20-second operation of long-handled tweezers.

From the hospital “Service Charge” $6 *** Bubbles? Crayons? Purell? Probably Purell.

Nearly $900. I think a variety pack of crochet hooks would run less than $10.

The bottom line: What I already knew. I would be independently wealthy if paid for the services I provide.

:)

Linda

;'')

(In response to friend's and family's support through commenting to my postings)

Last February, I reawakened a 25-year-old passion for writing and, in the last few months, I have found either straight-forward or round-about ways… big breath… to share what I write. While most of what I write is not in a nut shell, there are certainly times when I am left wordless.

I often read through the comments that some of you have left. They make me laugh; they make me think; they make me thankful. And some I can respond to and some I cannot. So this afternoon, I need to clear the air. You need to know that I read them all. You need to know that sometimes I stand up and walk away, speechless… wordless. You need to know that if there’s a lack of reply, my screen may be blurry, my keyboard may be wet, but I have a smile on my face.

Many times on this journey I have shed tears, but a minority of them have been over this crazy thing called cancer. In a world where the headlines are negative and where our knee-jerk reaction is sometimes cynical, I am left in awe: there is much kindness in the world. And that bowls me over regularly. More than breast cancer ever has.

Staying strong with occasional happy tears -> ;’’)

Linda

A Mish-Mash

Some days I’m better at collecting words and typing them from old journal entries than writing new words. Today is one of those days.

September 26, 2009 (a mish-mash of words and thoughts)

Choice. There’s always a choice.

Deb’s corn bags are wonderful. A couple minutes in the microwave and they radiate heat to achy parts like magic. Deb makes these bags using field corn – perhaps imported to Massachusetts from Iowa? :)

The moment is the safest place to be, breathing in and out.

I told a friend I LOVE fall because of the change. She laughed at me, “It’s the same every year!” Aha, so it’s safe change.

Occasionally, I call Dad in the middle of the day… and he always answers his cell phone. Last week I caught him while he was feeding the cows in the timber. I got to hear the cows!! Of course, they were vocal because he had stopped mid-chore to talk to me, so the conversation didn’t last long. He was getting butted left, right and center. It was good to hear the cows. Going to the farm with the boys is ritualistic. We do a hunt for all the tractors, see if they have an orange triangle on the back, sit on the tractors with their uncle. Dad takes us in his pickup truck for a drive to the timber to see the cows. In the spring this meant looking for tiny clumps of fresh clean fur – baby calves. Spring break 2010 in Iowa? I want to kiss the black dirt and the dusty gravel.

End of journal entry.

Staying strong,
Linda

Frustration

This is not my speed. I slept from 7 p.m. until 5:30 a.m. After ten hours of sleep, I am normally a power house. And I was for about four hours this morning. Then, poof. Energy gone, back to the same old Day 5 fog, ache and tiredness. After sleeping that long, I thought for sure I would be going all day. But, no. It was a quick adrenaline rush full of power. In a few short hours it left me shaky, and then wiped out. This must be “fatigue.”

I’m sitting in the basement amidst our new storage units in the guest bedroom. We bought a house with square rooms and little storage; we are not square people with a little bit of stuff. We carted lots of stuff from Chicago to Boston, and, four years later, we are still unpacking. This room is my chemo project. This morning I did manage to empty one box of games into my new storage unit. Every day I’m working in it a little bit so that by the end of chemo the basement will be organized. And like my three-year-old Liam, or perhaps more like my 89-year-old Grandma Murphy, “I’m doing it myself.” Whether moving three books to the shelves, ten games to a cupboard or one pencil to the newly found supply cabinet, my aim is to work on it throughout these chemo days until it’s full. It’s a clean plate just waiting for my touch, my design, my energy. Perhaps tomorrow I’ll have a bit more energy.

For now, it’s warm tea, a warm cap, warm corn bags, warm fleece blanket, perhaps a nap… and not a lot of patience for this pace.

Staying strong but feeling ornery,

Linda

The Wig and the Real Hair

I nearly did her in a week ago! Last Saturday I put my wig on in the morning and wore it all day. With fewer cactus needles, it’s much more comfortable and it keeps heat in -- although I prefer not wearing it in the house. Anyway, Liam and I started preparing the rice. He is all about cooking right now. Loves it! I put the rice on the stove, washed the asparagus—basically the normal supper time groove. Then it happened: I took the lid off the rice and my glasses fogged up. I sprung back away from the stove. The tenderness of the situation hitting me full force. I may very well have singed my $400 wig on the very first day I wore it for any length of time. I zipped to the bathroom. My bangs were intact. Whew!

My college friend and her daughter were here last week while Bill was working in China. The first night they arrived I put a casserole in the oven for dinner. I opened the oven door and it happened again. Whoosh! Hot steamy air heading straight for my hair! I leaned back to let the steam escape in front of me. Closing the door, I zipped to the bathroom again. My bangs were still intact. I went downstairs where our guests were unpacking. “Guys, I need to take my wig off to cook, and I want you to know that so you aren’t shocked to come upstairs and see me bald in the kitchen. OK?” So I did a private reveal and they were both OK with it.

A few nights ago I thought I should do a “check” with Will. We’ve started playing a game of “you ask me any two questions and I ask you any two questions.” They are usually questions of favorites, but I make it clear that any topic is fair game. The question I needed answered, “Will, do you like my wig or my bald head better?” His immediate reply, “Hmm, I like them both,” sounding a bit disappointed at the lack of complexity of the question. Whew! I know where Liam stands. Often when I have the wig on, he’ll point to it and say, “I want spiky hair!” We’ve talked about the fact that when it’s on my head it’s mine and only I can take it off. Finally after many checks with Bill, he says he doesn’t mind one way or another. I love him.

I had cupboards installed in the basement and it took a day to install them, so I went down in the morning and had a chat with the two guys, then said, “By the way I’m on chemo and I don’t always wear my wig in the house. So you will probably see me bald.” “No problem!”

A good friend stopped by one day and I answered the door wigless. She didn’t faint and seemed to feel comfortable. So... I have established my home as wig-free territory, at least until the snow flies. If you stop by, don’t be surprised if I answer the door as Baldy. I’m OK with it. But if you really aren’t, I understand completely. I would rather dress for your visit than not have your visit. :)

If you’re curious…
The wig is washable. If I wear it daily, I need to wash it once a month in cool water, then hang it on a wig stand to dry. As it dries, it bounces back into style. An easy shake and quick comb should bring it back to its original look.

I know where to place it because the front of the wig should be set the width of four fingers, laid horizontally, above my eyebrows. It’s amazing how accurate that is. By the way, if you are a true friend, you will tell me if something is a little askew. I would tell you if you had a bugger. That’s normal conversation in our house.

Most of the dark hair on my head is gone, but I still see and feel a lot of hair. What’s left is blonde – or gray from the week of expereementing. If I’m really this gray, I’m putting Katie, my hair dresser, on alert now to restore my “true” color in the spring the minute I’m released from chemo life and have put the wig in long-term storage. I’ve heard I may have to wait a while before going back to my color. The hair now is softer than the original full-head-of-hair crew cut of Halloween. A friend of mine said it feels like chick fuzz. And that’s what it feels like when I walk: The relative wind I create moves it. It reminds me of walking through of a roomful of cobwebs gently brushing my scalp. I get the same sensation on my legs, but that’s a different story.

Staying strong and not quite hairless,
Linda

3 down 5 to go!

Home and snuggled in bed with my cherubs! All went well today; I had a view of the Charles River. Bill's in China, so a college friend and her daughter, who is my god-daughter, came out from Chicago for the week. They dropped me off at MGH and then came back to pick Will and Liam from school. Then my neighbor brought me home. All worked like clock work! (Thanks, guys!)

My port finally worked with my head between my knees. I'm looking for a mounted camera next time and perhaps taking a game of Twister.

Bill returns at midnight tomorrow. So Sunday will be a "Mommy, Daddy, Will & Liam" day!

Have a great weekend!

Staying strong, Linda

My wicker life boat

My wicker life boat is floating nearby again. I’m a day away from another round of chemo. Now I pull my life boat out only in the morning and at bedtime to brush and floss my teeth and take two little pills. Since early October I have kept my toothbrush, floss, toothpaste and towel quarantined from the other Tinkler germ havens. Although we try to contain everyone’s toothbrush in a separate glass, on occasion there has been an obvious game of musical toothbrushes held in the bathroom. I don’t want my toothbrush involved in that.

Tonight I’ll review the inventory of the whole boat, making sure every anti-nausea med is in place and reviewing the specific anti-nausea directions through Day 5. Next I consider the side effects of the anti-nausea meds and make sure their antidote is in place. And if the first concoction doesn’t work, there’s another level to resort to.

Tomorrow night I’ll take the basket from its cupboard in the bedroom, and after rifling through it at bedtime, I’ll move it to the kitchen counter. That way when I wake up at 3 a.m. I won’t be pawing through a cupboard to find it and jiggling pill bottles upstairs. I can turn a light on in the kitchen, evaluate and diagnose and treat without interrupting my sleeping beauties upstairs.

I keep it tethered close by the first week as I watch the clock and take meds as directed. I don’t wait for the feeling to drift by. I’m determined to avoid it if I possibly can. By Day 4, my gratitude for my wicker boat grows thin. While I appreciate it, I’m tired of having it so close. Finally, around Day 7, I release the line and tow it at length behind me, thankful I only need it for normal tooth maintenance and two little pills, once again.

Staying strong and afloat, Linda

Power and Prayer

Power. For me, being treated for cancer, especially going through chemo, means losing power and control. No choice. Every person facing this comes to the table from a different life journey. I've always felt that I'm the protector of my children. Previously invincible, now, I've become the protector of myself, and as that, I’m going to maintain as much control as I can. I own it and I have to do what’s right for me and my family. In a way this is a new position of power. This is a full-time job. Along the way, in June and July, I had more fear and anger than feelings of power. But, Bill and I made sure then that we had complete confidence in the doctors to whom I had to turn the physical power over to.

Fortunately, people told me to take care of me, and do what I needed to do for myself and my family. I learned how to accept help from friends and strangers.

Fortunately, every person I reached out to who had experienced cancer has grasped a hold of me. Each has cast a rope around my waist, destined not to let me sink. They are pillars standing on the shore of a rocky sea they’ve already sailed. From family members to women who were mere acquaintances or absolute strangers, I have strong and formidable women who hold the ropes that are stabilizing me. They talk with me at 11 p.m. from Iowa. They told me what day to expect my hair to fall out. They warned me that my bald head would be cold sleeping. They laughed at me when I thought perhaps I should go to the ER after cleaning a toilet and getting light-headed. “You goofball! Open a window and take some deep breaths!” I am in a fit of laughter writing and thinking about that phone call!

Fortunately my pastor, in addition to his compassionate listening, said, “I really feel you will come out on the other side of this,” plus words to the effect that God can take anything I can dish out. I have had words with God. I have prayed and I have prayed aggressively. I have explained exactly where I stand with this. In my mind and through my writing, I have stood in the middle of a corn field in Iowa screaming at God. Then I thought perhaps He couldn’t hear me through the 8-foot high stalks of corn. So we took it to a hayfield. And I really screamed at Him.

I’m lifting from a journal the following that I wrote the last day of July. It’s actually written to you but back then I was too close to it to share with you. It’s raw footage of a different place than where I am today.

July 31, 2009 I think faith is a very individual personal decision, and I tend to keep it that way. However if you are someone who prays and are stumped, as I’ve been, about what to pray for us, I’ll share with you what I pray for. While I’m thankful for much, there are days when I pray pretty aggressively and angrily, which I have never done before. I’m sure that we, He and I, have an understanding that whatever comes out is indeed a raw passion for life and the commitment I have made as a wife, a mother, a daughter, a granddaughter, a sister, a cousin, an aunt, a niece, a god-parent, a guardian, a friend…. So when that passionate fire burns raw in my conversations with Him, I remind Him to be prepared for me to live life with a zest and a fierceness I seldom if ever have experienced in my life. With that said, this is my prayer.

“God, I thank you for all the gifts in my life.

I pray for daily blessings, including those small and special or large and complicated. For those that appear blemished.

I pray for your grace and that I in turn am graceful.

I pray that I feel the power of the Father, Son and Holy Spirit move through me every day.

I pray for strength and courage in all that I do.

I pray for wisdom in all decisions I make.

I pray that the cancer is contained, controlled and cured.

I pray for the doctors who are helping me. I pray especially for my surgeon’s expertise and thank you for her compassion.

I pray for those special women in my life who have had cancer and for those who are fighting it now. Thank you for putting these strong, formidable women in my path.

I pray for all of the people who will help me on this journey.

I pray for others who are ill or suffering.

I pray for my parents, brothers, sister and family. Please give them comfort as I know they are worried about me. Remind them daily that I am from strong stock: Murphys, Mills, and Iowans.

I pray that I live in each moment and truly see the beauty that surrounds me.

I pray for “Mommy, Daddy, Will & Liam.” We are a family of four with long full lives to lead together.

I pray all this in your name… Our father who art in heaven…”

And this is what I carry with me in my pocket on a prayer bracelet every day. And I pray this prayer not normally in tears but with great hope and tremendous faith.

And there are days when I so wish for an Iowa corn field to scream in – so, if you have one and feel the urge, go pray aggressively in it for me!

This must be the angry stage. :)

End of journal entry.

August 1, 2009, was a new day with a new sense of peace.

Staying strong with a pocket full of prayer, Linda

(Here's a prayer from another pocket.  My Granddad's Pre-Sermon Prayer.)

Perspective: a quick glance back to put the present in focus

Growing up in Iowa, I was lucky to have grandparents that were a big part of my life. Five that I remember events with, six if I count the picture of me with my great-grandfather when I was about two years old.

Grandma Mills is a letter writer and she went “green” before it was the thing to do. She, like her mother, is from the waste-not-want-not generation. From the letters Grandma has sent me over the years, I could publish quite a collection of recipes and pieces of advice – from how to remove a catsup stain to how to deal with cancer. She is a breast cancer survivor. I keep her most recent letter, written in July, on a shelf in my living room. It’s on stationery with a collection of tiny song birds and the words “Faith brings strength and hope.” This is what she wrote to me about her experience: “Well, I survived all that and am still kicking at 91 years. With age comes a lot of aches and pains, but they soon go away and don’t develop into anything. I just enjoy the beautiful world…” Grandma turns 92 this year. Hence my 50 year request to the surgeon… I’m 43 now. I’ll probably be close to 44 when I get to challenge Grandma to our next game of Scrabble.

Great Grandma Whittier, Grandma Mills’s mother, took care of me when I was little while Mom was out selling Avon. Unfortunately, I do not remember her voice, but I do remember the sound of her dentures clicking. She looked like a tiny Aunt Bea from Mayberry. Dress, apron and step-stool next to the kitchen counter. She taught her great-grandchildren the importance of self-sustenance. She kept graham crackers in the drawer under the oven. We all remember where the graham crackers were stored, and we all knew how to open the drawer and help ourselves.

Grandma Murphy’s orneriness drove us all a bit crazy at one point or another throughout her 89 year life. Few could argue that that spunk is what undoubtedly kept her alive for so many years. In her mid-80’s, she fought hard to keep a leg that was slowly succumbing to poor circulation. Finally, she realized to get rid of the pain the leg had to go. After she came out of surgery and recovery, she looked at me and said, “I haven’t looked at it yet.” I said, “Do you want to?” and she nodded. So I took the covers off so we could see her “stump” as it had been amputated just above the knee. It was all wrapped up meticulously in white gauze bandages; no sign of the pain she had endured for years. She looked down and said, “Aw hell, that ain’t bad.” This woman was gored by a bull in ’55, struck by lightning in ’60 or ’61, and poisoned by carbon monoxide from a furnace in ’71. Her fingers were mauled by an end gate seeder in ’77. Neighbors attest that she worked harder than most men. She milked cows by hand and threw bales of hay to the rack as they came off the baler. She sweated. (Truthfully, no one in Iowa perspires – farm work makes you sweat.) Looking at this pristine white bandage seemed tame compared to her catalog of life experiences. Her standard reply when asked how she was feeling: “Like I could kick the side out of hell!” I’m sure the devil flinched.

Grandpa Murphy was called Scoop. Although incredibly gruff and at times downright scary, he had a soft spot for his grandkids – as long as they were quiet and behaved. He could let loose a line of cussing and bellering that was simply unbelievable… and then he wouldn’t talk for a week. My last memory of Grandpa was when I was 10 years old. He called me into his bedroom and told me he was going to die. His fight was the first time I remember hearing the word cancer. His farm gusto was no match for colon/pancreatic cancer, probably undiagnosed for years.

Granddad Mills was a man of few words and little cussing, if any at all. Next to his hearty laugh, his prayers before dinners are how I remember his voice. He started grace the same way before every Sunday dinner, Christmas dinner, birthday dinner, and bullhead fish fry. While the prayer fit the occasion, to my ears it was always the same, perhaps more so in cadence than in words. I so wish I could remember the whole prayer; it was full of grace and truly beautiful. One piece of his thanks-giving was something like “Bless the hands that prepared the food for the nourishment of our bodies.” His prayer seems fitting for the many hands that have prepared healthy protein-packed meals for us over the last few weeks.

Thank you for the food, the notes, the help, the thoughts, the vibes, the prayers, the talks, the laughs, and of course, for perspective.

Staying strong, Linda

(Fast forward... Here's a tale about Grandma Mills' plant that is now in my care... Untying the Mother-in-law's Tongue.)

PJ Clash

This morning when the sun came up, I looked down to see a dark turquoise blue PJ top and purple and lavender plaid PJ bottoms. It’s been worse. Today I looked in the mirror thinking, “Why am I not matching? How does this happen?” I do laundry. I put matching shirts and bottoms together in the closet. At 7 a.m. I’m wearing a brown and white diagonally-striped top and green and white flowered bottoms. The boys rarely match, but I I’ve decided I would rather say, “Hey guys, why don’t you go get your pajamas on!” than dress them. Their pajama choice is potluck and I’m OK with that. They are 3 ½ and 6 years old.

I’m 43, waking up with worse top/bottom combinations than my children. But I’ve worked it out. It’s my middle of the night wake-ups. I get up and fumble around for my PJ bottoms. Creature of comfort trait: I never put them in the same place when I take them off to go to bed. If I can’t feel them lying on the exercise bike or over the end of the bed, I make my way to the closet and get a clean pair out, normally without turning on the light. I’m balding and my pajamas look like they’ve been in a train wreck. What a morning sight. Perhaps I could stick to solids and leave the patterns out of my PJ wardrobe. It would help a little. But that would mean getting rid of these lovely comfy broken-in PJs.

Speaking of morning sights, I got my Fed Ex delivery last Thursday. I opened the door, fully dressed – in case you were wondering – and smiled at the delivery guy, not my normal guy. He returned my smile, kind of. Then it hit me. “Oh, I’m sorry! I forgot to put my wig on!” “Thaaat’s OK!” he said cheerfully, sounding a little like Norm from Cheers. Then I looked again at his slightly embarrassed blue eyes and said, “Actually, we look a lot alike!” He was bald. We could’ve been brother and sister. I’d love to know how he is telling the story.

Staying strong, Linda

Warm Peas in a Pod

After the hour-long struggle of getting the boys to sleep in their own beds, both were in my bed asleep at 9:30 last night. Will cannot stand the sound of the heating going on. The bang, crash, wallop as the water creaks through the baseboard. He was in tears over the clanking. Every time I went into his room it stopped. “It doesn’t do it when you come in.” Finally, at 9:18, I heard another wail, pure misery. I called out to Will, “Come talk to me.” With that I heard two sets of feet scramble down the wood floor hallway. Will came to my side in tears, “I really can’t take it, Mom.” “Get in,” I said. Will scrambled in from the other side and tucked up next to me. “Yeah, Mom. Ahhh, I’m scared too.” My thought, “Liam Malcolm you are not scared. You are riding on your brother’s coattails. My voice, “Get in.” Liam bolted for the other side and lay down next to his brother. Instant calm. Both of them went to sleep in five minutes, side by side, no poking, no fighting – making me rethink bunk beds and putting the boys in one room to keep each other company. I asked Will about that idea this morning, wondering out loud if it would work. “Of course it would, Mom. We’re brothers; we love each other.” Do they get lessons in pulling heart strings before they become our blessings?

:)

Linda

Minor Changes

I wake up in the middle of the night and can’t get back to sleep. This chemo process has rewired something inside because I’m not always tired enough during the day to take a nap, except on Days 5 and 6.

Days 4, 5 and 6 after chemo are different. I’m a bit foggy on those days and a bit achy on days 5 & 6. Again, I’m done deciphering “why” and trying to get comfortable with “I am” and going with the flow, with the help of a little Ibuprofen. The slow flow of not doing too much other than sitting with warm corn bags on my shoulders and a cup of tea and perusing catalogs for Christmas ideas. Then boom. That elusive nap happens. I pull on my cap and take a nap.

Then on Day 7 I wake up and feel different. No aches.

I feel full Days 3 through Day 6. I’m going to take Nexium next time round. It’s not a nauseous feeling, proven by the fact that Bill’s tortellini and meatballs smelled so delicious last Sunday night. I just felt like I had no physical space to put food.

Through Day 7, sadly, coffee does not taste good. My strong, dark Sumatran Reserve tastes revolting all the time. I brew a cup of Breakfast Blend or a cup of tea and gently sip at it. Lack-of-caffeine headaches are second on my avoidance list, not far behind nausea.

My Trident mint gum is also revolting. I never thought I would be a watermelon-flavored gum person. But it tastes best. Liam agrees.

My appetite from Day 7 on has grown. My oncologist said it could be attributable to the steroid in those first few days of pills. My body needs a lot of protein. I used to be a granola-bar-on-the-way-out-the-door breakfast eater. Now I have that before taking the boys to school. Then I go home for my new standard: two eggs, meat, cheese and two pieces of toast. Or my latest and greatest: grilled meatloaf and cheese sandwiches. Yes, for breakfast. When my sister visited in October, she made a huge batch of meatloaf and froze it in individual squares. We thought it would make for easy dinners, but it’s been useful for solid breakfasts! I’m eating bigger portions but my jeans are not getting tighter.

(Detour: Within six hours of writing this, sausage is too spicy. One bite sets my mouth and throat alight. Wow. I dug through the garbage yesterday to make sure Peapod didn’t mis-shop and give me extra spicy. No. Regular. Did Jimmy Dean get his packaging mixed up?? I think I’ll not chance it again. Thankfully, if the sensitivity to spiciness continues, I love boiled potatoes with butter. Good old Iowa carbs -- they're grown in bulk in IDAHO but we eat a lot of them in IOWA.)

I’ve discovered a couple friends are up for breakfast some time, occasionally replacing coffee at Starbucks. They are researching breakfast haunts in town. I can’t wait for our first outing. However, I must say, on Day 6, the Starbuck’s Café Mocha was most tolerable.

With these changes, I have a new appreciation for stability. One of my newly respected at-home tasks: laundry. No matter what my body is going through or how it is changing, the mountain of laundry (the castle, as Liam calls it) is the same. The division of the laundry is the same. I murmur in a therapeutic rhythm that matches the toss of each piece, “Dark, dark, towel, jeans, white, Bill’s shirt, jeans, towel, dark, white, towel, towel, Bill’s shirt, towel, towel, towel…” That’s it. No unpredictability there. I know exactly what will be in that mountain before I start sorting.

Yes, a preponderance of towels. With my little germophobe hat on, towels are one-use only then dunked for a spin in hot soapy water. Consequently, when the laundry gets a little backed up, I occasionally have to dry off after a shower with one hand towel and two washcloths. We used to run out of underwear first, now we run out of bathroom linens.

:)

Staying strong and dry – one way or another, Linda

Keeping Track of Stuff

This morning I’m awake at 1 a.m. I’ve given up trying to decipher why and am just trying to accept that “I am.” I’ve checked Skype and I’m the only one on-line at the moment. Today is Day 7. The beginning of the Nadir period and coincidentally the day I must meet my FedEx driver in person. He is delivering a two-dose supply of medication that I need to sign for. The day after every chemo round, I give myself a shot of Neulasta. It’s a medication that gets my bone marrow to kick in and start producing white blood cells. Each dose is a tiny little 6 mg bit of liquid and requires refrigeration. The insurance company calls me to set-up delivery of these tiny vials. “Your co-pay is $25.00. If you choose not to sign and the shipment is damaged or lost, you are responsible for the replacement cost of $6,035.” And where exactly in my Malcolm help-yourself refrigerator, within the walls of exper-ee-ments, should I store my payload until I need it? I cringed when I heard the cost. I can do a $25 co-pay, what do others do who don’t have that convenient co-pay method in place? The cost of this drug reminded me of a skeptical news commentator say, “Curing cancer is near impossible – cancer is a big business.”

Will is keeping check of my hair and bald patches: “It’s like a cactus.” That explains why it’s uncomfortable to sleep! Cactus needles are not comfortable to lie on nor are they flexible under a hat or wig. I need to keep tabs on my wig; I’m trying to leave it in one of two places: in my bedroom in the wardrobe on the wig rack or on the big Dartington vase on the computer hutch. Being a creature of comfort, I frequently kick off shoes or slippers wherever I am whenever I feel like it. I admit that over our short six-day courtship, the wig is the same. Therefore, if the driver of the red van is reading this, I apologize for pulling my hair off while driving away from school yesterday. I thought I had checked all mirrors and windows, but there you were in my rearview mirror me as I cast the wig to the passenger seat.

A March of Dimes phone call sparked conversation between Will and me last night. I didn’t answer the phone when I saw the caller ID. He asked me “who” the March of Dimes was and I explained what the organization did and that there were organizations working to fight many diseases, including cancer. “Now, Mom, where did your cancer come from?” Me: “I don’t know. But do you know who else had breast cancer and survived? Grandma and Aunt Kris.” Will: “I hope you survive.” Me: “I will.” Although “survivor” seems to be reserved for the ranks of those who are on the other side of it, I include myself in that category already. I actually tend not to use the word because it gives credence to the opposite, and I only see myself surviving every day.

Liam’s Leapster went missing for several days. Bill found it yesterday behind the coffee brewer. I had a flashback and remembered I had confiscated it and needed a quick hiding place. That’s how many things in our house lose their way. Why a pack of gum is tucked behind the utensil urn. Why a chocolate pudding is behind the vase on the counter. Why batteries are on top of the china hutch. Why my wig is atop a vase on the computer hutch.

:)

Staying strong, Linda

Washing Away My Hair: 6 days after 2nd round of chemo

Day Six is undoubtedly the bounce back day. Monday my brain was more ambitious than my body. My body reminded me of that after a few errands. Tuesday I was achy again and not quite up to speed. I’ve been up at 3 a.m. the last two nights. As I recall, at least one of the anti-nausea meds is a steroid. I think it’s wiring me at strange hours. Poor Bill is like a cat in a room full of rocking chairs; the minute I get up he jumps up to make sure I’m OK. “Just wide awake!” I chirp as I bounce down the stairs and wonder what I can accomplish quietly at 3 a.m. Random thoughts this a.m. …

My chameleon-esque head may make it difficult to pick me out in a crowd: crew cut, wig or hat. I go to sleep every night reciting a line from Twas the Night Before Christmas: “Mama in her ‘kerchief and I in my cap had just settled down for a long winter’s nap.” I wear a hat to bed to keep my head warm. And to keep my bristly hair from getting stuck in the pillow. I must notice the cold because of the very sudden loss of warmth – do bald men not get cold heads? Is there a sub-culture I don’t know about? Millions of guys wearing hats to bed and reciting the same line as me at bedtime???

The boys and I are comfortable with my crew cut around the house. My hair is slowly washing away. I’m happy with my decision to get it buzzed. Gently washing away short little hairs seems more mentally manageable than losing handfuls of locks. Occasionally I stop in front of a mirror and ask out loud, “Am I really having to do this?” The bald reflection is confirmation. Thankfully, and I’m going to take liberty in saying, I have a nicely shaped head… undeniable proof that I have great parents who didn’t drop me on me on my head when I was a baby. :)

Port update: I’m becoming one with my port. The tenderness around my port is gone. I’m sleeping without paying much attention to it. After a brief conversation with my oncologist, I am convinced that the whole titanium little contraption is stable. One of his patients who had a port asked if she could play hockey; he checked with the manufacturer – no problem, preferably no direct hits. She played two seasons with it and her team won the league in the second season. Perhaps this little bionic gave her super powers a boost that season.

As the nurse accessed my port on Friday, we ended up doing a little game of Simon Says. Saline would go in just fine but blood was slow to return. First, she had me take a deep breath and hold it. Then I raised my right arm over my head. Then I stood up and took a deep breath. Then I turned my head to one side. Then I took another deep breath and let it out, “OK! Don’t move a muscle!” It was working. I told her I drew the line at standing on my head and would definitely be looking for cameras if she made that request. I was assured this was completely normal as often times a little check-valve, as Bill called it, forms somewhere in the line. Yes, we talk engineering during chemo. So while Bill and my nurse discussed the intricate properties of check-valves, I envisioned a simple dog flap that needed to be knocked off its hinges.

Staying strong,

Linda